Last Chance Against Cancer

The Standard Treatments Haven't Worked, So A Deland Couple Have Taken Their 5-year-old Son To Mexico For A Dose Of Unconventional Therapy.

May 23, 1993|By Linda Creesy, Sentinel Correspondent

DELAND — Cancer was the farthest thing from Dave and Jayne Roberts' thoughts when their 5-year-old son Casey was diagnosed with a rare form of the disease last July.

Response to radiation and chemotherapy treatments was initially successful. But two months after the tumor on Casey's spine had calcified, the cancer returned and began to spread.

Now his parents are optimistic that an experimental treatment for this type of cancer, which is offered in Mexico, will cure the youngster. Jayne Roberts said the treatment has proved effective in more than 80 percent of the cases tested.

''We're optimistic this will be helpful,'' said Jayne Roberts before she, Dave, their oldest son, Brian, and Casey headed to Mexico three weeks ago for three weeks of treatments.

''There are very few options left if this doesn't work,'' she said.

The youngster had had neck and lower back pain for a few months last year when his parents took him to his pediatrician.

''Casey's symptoms were treated, but when the pain didn't go away, he was referred to both an orthopedic doctor and to Shands Hospital in Gainesville,'' his mother said. ''The doctors at Shands knew something was there. A biopsy confirmed our worst fears.''

A primitive neural ectodermal tumor, a small round cell that forms in soft tissue, usually results from a chromosome deficiency, said a spokesman for the National Cancer Institute's information service in Florida.

Because Casey's cancer is inoperable and he is not a good candidate for bone marrow treatment, he began eight months of chemotherapy, which ended in February. He also underwent five weeks of radiation treatments in between.

When his treatments ended, the tumor on his spine had calcified.

''He had responded well to the treatments, and there was no indication at that time that the cancer had spread,'' Jayne Roberts said.

The good news was temporary. In April, Casey went to Shands to be treated for shingles. Because his symptoms persisted, doctors ran more tests. The cancer had not only returned; it had spread.

''We're dealing with it as best we can, one day at a time,'' Jayne Roberts said. ''The goal of the treatments was to get rid of the cancer. He got sick from it (the treatment) and spent a lot of time in the hospital. He doesn't fully understand the extent of his illness.''

Doctors discouraged any further chemotherapy or radiation. Instead, his parents decided to take him to Mexico for three weeks of experimental treatments.

''I didn't want to put him through chemo or radiation again,'' his mother said. ''A couple of people told us about the experimental treatments when Casey was in chemo. We liked the idea because the treatments are non-toxic and there are no apparent side effects.''

Treatments will cost the Robertses $6,200, less than conventional treatments, Jayne Roberts said. Because the treatments are experimental, they are not covered by medical insurance, so the family has relied on fund-raisers by local groups to help defray the costs. Before they left for Mexico, $6,000 had been raised.

While in Mexico, Casey's treatments will consist of a combination of drugs and diet.

Many people choose experimental treatments, said JoAnn Schellenbach, with the American Cancer Society in New York City. ''You can understand why people do this. If someone says they have an 80 percent success rate at $6,000, you'd do this, too.''